The Care Act 2014: a missed opportunity?

Abstract

This paper examines the Care Act 2014 in relation to the
requirements of the UN Convention on the Rights of Persons with
Disabilities 2006, in particular those of Article 19, the right
to live independently and be included in the community. It finds
that the Act's overarching principles are broadly compatible with
the Convention and that its legislative framework constitutes a
significant improvement on previous provisions. The paper argues,
nonetheless, that an opportunity to enact legislation which fully
implements Article 19 in England has been missed. Article 19 is a
'hybrid' right: it melds together civil and political rights to
autonomy and inclusion with the socio-economic right to support
services essential for their exercise. In England, by contrast,
the provision of services continues to be understood not as
'right' but as 'welfare' entitlement. The 'paradigm shift' from a
welfare to a rights approach to disability which is the
fundamental purpose of the Convention is thus not fully
accomplished. As a result, it is argued, there is no recognition
in the Act of a right to live independently and be included in
the community; and further gaps in compliance with the Convention
arise. Vital areas where further development is required include
commitment to progressive realisation of the socio-economic
elements of Article 19 to the maximum of available resources;
effective monitoring and redress systems; and full central
government accountability. The paper concludes that the
opportunity provided by development of the Care Act 2014 to enact
CRPD-compliant legislation to implement Article 19 has been
missed. The support services essential for the exercise of
Article 19 remain vulnerable to retrogression, unmonitored and
unenforceable. As a result, Article 19 does not have full
domestic legal effect in England, calling into question
implementation here of the Convention as a whole.

1. Introduction

The Care Act 2014 (the Act) updates and consolidates the legal
framework for provision of social care in England. It comes five
years after the United Kingdom ratified the UN Convention on the
Rights of Persons with Disabilities 2006 (CRPD/the Convention).
This paper examines the Act in relation to the requirements of
the CRPD, in particular those of Article 19, the right to live
independently and be included in the community, and the
socio-economic right to support services under Article 19(b).

The purpose of the Convention is to 'promote, protect and
ensure the full and equal enjoyment of all human rights and
fundamental freedoms by all disabled people and to promote
respect for their inherent dignity'. [2] It has been
described as an 'implementation' convention: [3] it aims to
ensure that all existing rights are actually enjoyed in practice
by all disabled people on an equal basis with others. Rights
reaffirmed include civil rights to life, liberty and a fair
trial; political rights to take part in government, access public
services and vote in elections; economic and social rights to
education, to work, to health and an adequate standard of living;
and the right to participate freely in the cultural life of the
community. The CRPD also sets out other, 'enabling' rights. One
such is Article 19, which enshrines the right of disabled people
to live independently, with choices equal to others, and to be
included in the community.

Article 19 is arguably one of the most important rights in the
Convention, since the choice, freedom and inclusion it demands
are pre-requisite for the exercise in practice of all other
rights. To facilitate such autonomy and participation, Article 19
requires ratifying States to ensure that disabled people have the
opportunity to choose where and with whom they live; and that
they have access to the range of services necessary to support
community living and to prevent isolation or segregation. Key to
realisation in practice of Article 19, and so of the Convention
as a whole, is therefore the domestic legal framework for
provision of such services.

The United Kingdom ratified the CRPD in 2009, promising to
ensure and promote the full realisation of all human rights for
all disabled people in its jurisdiction. In so doing, it
undertook 'to adopt all appropriate legislative, administrative
and other measures for implementation of the rights recognized in
the… Convention', [4] including Article 19.

At the time, the domestic legal framework relating to adult
social care in England had long been recognised as being in need
of review. In 2008, the Law Commission [5] identified 34
relevant Acts of Parliament, noting the legislation's out-dated
concepts that favoured institutional care for disabled and older
people, its offensive, stigmatising language, and its potential
incompatibility with European Convention rights. Unsurprisingly,
this body of law gave rise to many difficulties in its
application. These included wide and unpredictable geographical
variations in the availability of support, duplication of
bureaucracy, [6] and the on-going failure of
statutory bodies to work together, [7] all of which
resulted in significant avoidable costs for local authorities,
the State and disabled people alike. [8] For the latter,
the cost was not just financial: it resulted in restriction or
denial of the support required for the exercise of their Article
19 rights to live independently and be included in the community.
[9] This legislative framework was
therefore ripe for repeal, with development of its replacement
offering an opportunity to introduce new, CRPD-compliant,
'legislative, administrative and other measures' [10] to implement Article 19.

The resulting Care Act 2014 seeks to address some of the
problems outlined above, while also consolidating and updating
the legal basis for provision of social care in England. This
paper recognises that the Act's overarching principles and
legislative framework constitute a significant improvement on
previous provisions, and appear, on their face, to be broadly
compatible with the Convention. However, it holds that the
opportunity to enact legislation which fully implements Article
19 has been missed in some key respects. One central omission is
the failure to enact a clear statutory right to live
independently and be included in the community. This, it is
argued, springs from successive United Kingdom governments'
continuing (mis)understanding of the socio-economic elements of
Article 19 as 'welfare' rather than as 'rights'. This
(mis)understanding also leads to other vital areas where further
development is required. Compliance with international human
rights law requires progressive realisation of the socio-economic
elements of CRPD Article 19 to the maximum of available
resources; establishment of effective monitoring and redress
systems; and full central government accountability.

The analysis below considers Part 1 of the Care Act as it
relates to the individual receiving care in England. [11] The Act's overarching
principles and legislative framework are first compared to those
of the CRPD. Enactment of a statutory right to independent living
is then discussed, before other areas for further development are
highlighted.

2. The Care Act and the CRPD

2.1 Over-arching principles

The philosophy and practice of independent living, as
developed by disabled people since at least the 1970s, [12] has been described
as 'the emancipatory philosophy which empowers disabled people
and enables them to exert influence, choice and control in every
aspect of their life'. [13] In direct contrast to the 'welfare' model, which sees
people as passive recipients of compensation for their exclusion
from society, [14]
it aims to bring about holistic social change, not only in the
lives of individuals but also more broadly to structures,
attitudes and approaches to disability in the wider
community.

Disabled people and their organisations played an influential
role in bringing about and in drafting the CRPD, [15] and elements of their
independent living discourse can be found reflected throughout
the Convention. [16] During drafting of Article 19, the interpretation of
'independent living' was contentious, with some stressing that it
should not be seen as endorsing disabled people's independent
living movement. However, the concept was important to many
delegations, and concensus was eventually reached for using the
term 'living independently' with the understanding that it was
intended to reinforce the concept of 'community living'. [17]

The CRPD sets out the 'general principles' underlying the
Convention in Article 3. First on the list is:

Respect for inherent dignity, individual autonomy
including the freedom to make one's own choices, and independence
of persons.

Others include

Non-discrimination

Full and effective participation and inclusion in society,
[and]

Respect for difference and acceptance of persons with
disabilities as part of human diversity and humanity.

Article 19 itself fleshes out these core principles in the
context of living arrangements and inclusion, requiring ratifying
States to 'recognize the equal right of all persons with
disabilities to live in the community, with choices equal to
others'.

Independent living, as understood by disabled people, has also
featured strongly in English domestic policy. The Prime
Minister's Strategy Unit 2005 report on Improving the Life
Chances of Disabled People[18] identified independent living as one of four
areas central to future strategy for bringing about its
'ambitious vision' that by 2025, disabled people should have the same opportunities
and choices as non-disabled people and be respected and included
as equal members of society. [19]

Work towards the 'transformation' of delivery of social care
through 'personalisation' of services and integration of funding
streams ensued, [20] as did a review of relevant legislation.

In 2010, the Law Commission's initial consultation in its
review of adult social care [21] included 'a principle…based on the
concept of independent living' [22] as one of a list of possible statutory
principles to be included in a future consolidation Act. [23] The Commission's
provisional view was that 'independent living is not …
easily translated into a precise statutory principle', but it
asked for views. [24] The responses received were mixed. On one hand, those
familiar with disabled people's understandings of the
concept [25] were strongly supportive of its
inclusion and primacy, believing that it should become 'the first
and paramount consideration whenever social services make a
decision or take action.' [26] Others were less clear
about its meaning, and thus about its relevance. [27] In due course, the Commission
recommended individual 'well-being' as the statute's central
principle, [28]
and the Government agreed. [29] Efforts to re-introduce the concept of
independent living as an over-arching principle continued
throughout Parliamentary debate on the Care Bill. [30] These arguments were
resisted by the Government on the grounds that 'it is unnecessary
because the concept of "independent living" and "community
inclusion" are already a core part of the wellbeing
principle.' [31]
Individual 'well-being' was finally enacted as the over-arching
principle of Part 1 of the Care Act. [32]

'Well-being' is not defined in the Act, but is supported by a
list of outcomes and matters to which the local authority must
'have regard'. These resonate compatibly with CRPD principles and
Article 19. In particular, the Act emphasises mental and physical
integrity, [33] dignity, [34] and
individual control of services, and challenges traditional
assumptions of dependency. [35] The individual's
participation in decision-making is promoted, [36] and the
holistic nature of independent living recognised, as is the
principle of non-discrimination. Protection from abuse and
neglect echoes CRPD Article 16; [37] and other matters reflect
rights to work, to family life, to education, to housing options
and an adequate standard of living, and to cultural inclusion,
all of which feature as rights in the CRPD. Fundamental to a more
rights-based approach to disability is the recognition in the
Care Act that the individual - not the State - is best placed to
judge their own well-being. [38]

In general, then, although 'independent living' does not
feature in the text of the Act, the principles set out there
appear broadly compatible with those underlying the
Convention. [39]
When compared to previous paternalistic, out-dated and
stigmatising legislation, they constitute a welcome
transformation in approach. This incipient transformation is
however negated in practice by the government's insistence that
neither the well-being principle nor its supporting outcomes or
factors are intended to create any directly enforceable or
individual rights [40] - a point to which we return
below.

2.2 Legislative framework

The aim of the Act is not only to bring the principles and
language surrounding social care up to date, but also to
consolidate the mass of legislation, regulations, directions and
guidance accumulated in this field since the 1940s. In doing so,
it leaves the existing framework essentially unchanged, though
with some changes in focus.

Under the Act, local authorities have two levels of duty:
universal and individual. At the universal level, they must
promote individual well-being; prevent, reduce or delay the onset
of needs for care and support; [41] provide information and
advice; cooperate with local partners in the integration of
services; and shape a market of care and support providers. In
line with the current government's strong free market agenda, the
Act accelerates the on-going shift from local authority to
private and voluntary sector provision, [42] requiring
local authorities to 'promote the efficient and effective
operation of a market in services' [43] so that
individuals have a variety of high quality services available
when making choices in their lives.

At the individual level, a single 'duty to assess' remains the
sole means through which eligibility for services is determined,
[44] though now
remodelled to address some of the problems outlined above and to
conform to the Act's over-arching principles. While each local
authority has until now had discretion, within national
guidelines, [45]
as to how assessment is carried out, how eligibility criteria are
applied, and whether, and how much, service-users will be
charged, under the Act, regulations set out these aspects in more
detail, and set national eligibility criteria. [46] The Act
also introduces the new promise of a cap on care costs, [47] which will limit the amount any
one person must pay towards their care over their lifetime.

From a CRPD perspective, this legislative framework, when
considered within the over-arching principle of 'well-being'
outlined above, constitutes in many ways a significant
improvement on previous provisions. The emphasis on prevention,
information and advice, and integration of services is positive,
as are efforts towards consistency in assessment, eligibility and
charging . Nonetheless, it is argued here that key elements are
missing from the Act which prevent it from fully meeting the
Convention's requirement for 'appropriate legislative,
administrative and other measures' for implementation of Article
19. First and foremost is the failure to enact a statutory right
to live independently and be included in the community.

3. A 'right' to independent living?

Over past decades, disability activists and their allies in
England have achieved some notable successes. These include
formulation of a highly influential social model of disability;
moves away from segregation and hospitalisation and towards 'care
in the community'; [48] and enactment of the first disability discrimination
legislation in Europe. [49] They have also resulted in the introduction of some
elements of entitlement and choice into a paternalistic welfare
state, [50]
including a right to receive support in the form of Direct
Payments [51] and
a (limited) right to choose one's residential accommodation.
[52] Such
developments have helped to implement in practice the civil and
political rights to autonomy, choice and inclusion set out in the
head of Article 19, and they are reaffirmed and further carried
forward in the Care Act. [53]

More recently, as noted above, the Prime Minister's Strategy
Unit report on Improving the Life Chances of Disabled
People was published in 2005, while the Convention was still
in negotiation. Despite the UK's involvement in those
negotiations, there is no reference to them in the Report.
Nevertheless, the aims and understandings of the writers of
Report also fit closely with those of the drafters of the CRPD,
and with the terms of Article 19.

At the same time, a private member's Bill setting out a right
to independent living was drafted and presented to
Parliament. [54]
This took respect for and promotion of disabled people's human
rights as a central principle. [55] It set an emancipatory and inclusive agenda,
based in the principles of independent living and including
provisions to bring about fundamental and holistic change in line
with the terms, purpose and ethos that we can now recognise as
compliant with the CRPD. The Independent Living Bill was passed
three times by the House of Lords, but made no further progress.
Instead, the Law Commission began its own review of adult social
care, discussed above.

In the policy field, the process of 'transformation' in the
delivery of adult social care, noted above, was set in train
in 2006. In the course of that transformation, the understandings
of independent living which lie behind the Life Chances report
and the Independent Living Bill have undergone a variety of interpretations and
re-interpretations, [56] initially without reference to human rights, to the
CRPD or to Article 19. A turning point came in 2012 with the
Joint Committee on Human Rights' report on Implemention of the
Right of Disabled People to Independent Living. [57] Here, the Committee stressed
the binding nature of the CRPD, [58] regretted that the Convention had not been
incorporated into UK law, [59] and noted that 'disabled people in the UK do
not enjoy a right to independent living in domestic law.'
[60] It was
'concerned… that merely filling in the gaps in the current
legislative framework will still not accord the right to
independent living the legal status that its fundamental
importance deserves', [61] and recommended consideration of free standing
legislation to implement Article 19. [62] During Parliamentary debate on the
Care Bill, the JCHR [63] and others [64] renewed their advocacy of enactment of a
free-standing right to independent living, but to no
avail. [65]

While these events were in train in England, the CRPD was
drafted, adopted, came into force, and was ratified by the UK.
The CRPD crystallises what Quinn and Arnandóttir have
described as a 'triumph of ideas': '[i]t both reflects - and
helps us to clarify as well as accelerate - the shift from a
traditional framework of reference on disability (often referred
to as the 'medical model') to one based more explicitly on
securing the rule of law and human rights for persons with
disabilities.' [66] The Convention thus demands of
ratifying States a transformation in understanding of and
approach to disability. Here, impairment is no longer seen as an
aberration to be 'othered', but as universal human variation to
be accepted, respected and accommodated. [67] Disabled
people are no longer viewed as excluded recipients of welfare,
but as active, valued and equal rights-holders. As Quinn and
Arnandóttir insist, '[t]he importance of this paradigm
shift cannot be overemphasized.' [68]

We have seen above that Article 19 is fundamental towards that
shift in understandings. [69] To ensure its role as an
'enabling' provision, Article 19 is a 'hybrid' right: it melds
together civil and political rights to autonomy and participation
with the socio-economic right to the support services essential
for their exercise. [70] As Serbian delegates recognised early in the
Convention negotiations, 'one of the preconditions to exercise
the freedom of choice of where to live would be the necessary
support.' [71] The two are inseparable, not
only in law, but also in practice.

In England, however, despite strong support for civil and
political rights to autonomy, choice and inclusion, we have found
longstanding resistance, even in the context of CRPD
ratification, to enactment of a right to independent living. To
explore why this might be the case, we must return to the
international human rights arena. The indivisibility and
interdependence of all human rights - civil, cultural, economic,
political and social - is a well-established doctrine at
international level, and one to which - at least in this arena -
the United Kingdom subscribes. [72] It is a principle that
has particularly significant consequences for disabled people. As
Quinn and Bruce argue,

[s]et against the backdrop of using rights to restore power to
people, economic, social and cultural rights have an enabling
function - they provide a bridge whereby persons with
disabilities can take their place as valued and often highly
productive citizens…. they enable people to take charge of
their own lives. It is in this sense that economic, social and
cultural rights enhance freedom. [73]

Article 19 melds together the two 'sets' of rights for exactly
that purpose. [74]

The United Kingdom, however, has not incorporated
international economic, social and cultural rights standards into
its domestic law. Whilst the Human Rights Act 1998 'brings home'
the civil and political rights set out in the European Convention
on Human Rights, and the Equality Act 2010 prohibits
discrimination on the basis of disability, successive
governments [75] have chosen to view
international socio-economic rights not as 'rights' but as
principles and objectives to guide politicians in the allocation
of scarce resources. [76] They argue that these
'principles and objectives' are implemented through the policies,
laws and practices of the British welfare state [77] - such as, for example, the
Care Act 2014. Under this argument, rather than being identified
as constitutional rights of equal importance to and indivisible
from the civil and political rights they enable, support services
become 'welfare entitlements' subject to the gift (or denial) of
the State. To enact a free-standing, directly enforceable 'right'
to independent living, and by analogy to the services required to
support that right, would directly counter this long-held and
strongly entrenched position. [78] Indeed, during CRPD negotiations, the United
Kingdom government argued against the inclusion of Article 19(b)
which requires the provision of access to a range of services to
support community living and to prevent isolation and
segregation. [79]

So does it matter that the Care Act is welfare- rather than
rights-based? We have seen that the CRPD demands paradigm change:
from a welfare to a rights perspective. We have also recognised
that the over-arching principles set down in the Care Act show
significant improvement on previous provisions, and appear, on
their face, to be broadly compatible with those underlying the
Convention. To that extent, an incipient transition in approach
appears to be under way as compared to that evidenced in the
paternalistic legislation inherited from the 1940s. However, one
important ingredient is still missing. As Quinn et al
reiterate, 'in the context of disability… the removal of
barriers through civil rights and non-discrimination law is
clearly not enough.' [80] Here, the role of economic,
social and cultural rights is not one of welfare provision as
compensation for exclusion, but is one of enabling
inclusion, and thereby the exercise by disabled people
of all other Convention rights.

In England, [81] however, this discourse remains
invisible. The socio-economic elements of Article 19 continue to
be viewed not as equal, constitutional rights, but as 'welfare'
entitlements. Individuals, policy-makers and law-drafters have no
recourse to international human rights frameworks to guide
implementation. The 'paradigm shift' from welfare to rights
thinking which is the fundamental goal of the Convention is not
fully accomplished; and the opportunity to enact a new,
CRPD-compliant right to live independently and be included in the
community in line with Article 19 is missed. [82]

Moreover, further gaps in compliance with international human
rights law arise. When the UK ratified the CRPD, it undertook to
realise the economic, social and cultural rights in the
Convention - including those under Article 19 - in line with
international law obligations. [83] These obligations are
found in the International Covenant on Economic, Social and
Cultural Rights (ICESCR/the Covenant) and its jurisprudence.
According to that jurisprudence, States ratifying the Covenant,
as the United Kingdom did in 1976, give an unqualified
undertaking to 'take steps… with a view to achieving
progressively' realisation of the rights. [84] Steps taken must be 'deliberate,
concrete and targeted as clearly as possible' towards meeting the
obligation set out in the Covenant. [85] A 'minimum
core obligation' must be met 'to ensure that satisfaction of, at
the very least, minimum essential levels of each of the
rights'. [86] Failure to do so constitutes
breach of a State's obligations. [87] Beyond this
minimum, States must respect, protect and fulfil the rights
concerned. Failure to perform any one of these three duties,
albeit progressively, also constitutes a violation of the
right; [88] and any deliberately
retrogressive measures must be fully justified. [89] To
ensure that these obligations are met, 'the Covenant norms must
be recognized in appropriate ways within the domestic legal
order, appropriate means of redress, or remedies, must be
available to any aggrieved individual or group, and appropriate
means of ensuring governmental accountability must be put in
place.' [90]

The remainder of this paper examines the Care Act 2014 in
light of these requirements.

4. The Care Act and international law obligations

4.1 Minimum essential levels of provision

To avoid fundamental breach of the Covenant, at least a
minimum essential level of provision must be met. Under the Care
Act, the allocation of resources in any individual case will
continue to depend on the application of eligibility criteria,
until now determined by each local authority in line with
national guidance. [91] Since 2003, that guidance has set out four bands of
eligibility: critical, substantial, moderate and low. "Critical"
means that life is at risk, or there is great risk of serious
illness or harm; "substantial" covers situations of abuse or
neglect, and/or where the majority of personal care
routines, work or education, social relationships and/or family
responsibilities cannot be sustained; the inability to sustain
several of these personal, work and social routines and
responsibilities constitutes the "moderate" band; and "low"
eligibility applies where one or two such roles or
responsibilities cannot be undertaken. As yet, no English local
authority has taken a decision not to provide services
to those eligible at critical level, although a small number
currently provide services only at that level. [92]

English common law has also recognised a minimum essential
level of provision which appears to correspond broadly with the
'critical' band of the guidance, albeit dressed in common law
arguments of 'reasonableness'. In the 1997
Gloucestershire case, [93] McCowan J held that the availability of
resources should be 'no more than one factor' in assessment of
eligibility, recognising that:

[c]ertain persons would be at severe physical risk if they
were unable to have some practical assistance in their homes. In
those situations, I cannot conceive that an authority would be
held to have acted reasonably if they used shortage of resources
as a reason for not being satisfied that some arrangement should
be made to meet those persons' needs. [94]

It is arguable that these provisions meet the 'minimum core
obligation' under international law, although significant
examples continue to arise where they have not been realised in
practice, with consequent serious harm and loss of life amounting
to breach of CRPD rights. [95]

Beyond this minimum, States must take steps to progressively
realise provision to the maximum of available resources.

4.2 Progressive realisation

Over recent years, in response to long-term systemic
underfunding, [96]
local authorities have increasingly raised the threshold of
eligibility for social care. By 2012, 84% of councils were
providing services only at the 'substantial' level and above,
while 5 councils provided at 'critical' level only. [97] According to the
National Audit Office, '[e]ighty-five per cent of adults over 65
now live in local authorities which arrange services for adults
with substantial or critical needs only. One per cent of adults
live in authorities which provide for critical needs
only.' [98] It has
been further estimated that 69,000 working-­age disabled
adults in England have fallen out of the care system because of
these changes to eligibility. [99] Older adults have experienced the greatest
reduction in provision, at 12 per cent in real terms, while
younger adults with learning disabilities have experienced the
smallest reduction, at 0.2 per cent in real terms. [100] In addition,
because social care provision is means-tested, there are many
'self-funders' who have not had access to the system in the first
place. [101]
Combined with other cut-backs in financial support, the rising
eligibility threshold for social care has led the Joint Committee
on Human Rights to warn of 'a significant risk of retrogression
of independent living and a breach of the United Kingdom's
Article 19 obligations.' [102]

Much therefore depends on the national eligibility criteria
set out in the regulations made under s13(6) of the Act. These
[103] state
that an adult will meet the eligibility criteria if (a) the
adult's needs are caused by a physical or mental impairment or
illness; (b) as a result of those needs, the adult is unable to
achieve two or more of a list of outcomes; and (c) in consequence
there is, or is likely to be, a significant impact on the adult's
well-being. The listed outcomes include (a) carrying out basic
care activities, such as eating and drinking, getting dressed,
preparing meals and maintaining one's home; (b) maintaining
family or other significant personal relationships; (c) accessing
and engaging in work, training, education or volunteering; (d)
accessing necessary facilities or services in the local community
such as medical, educational or recreational facilities; and (e)
carrying out any caring responsibilities the adult has for a
child. Whereas the Draft Regulations required only one of the
list of outcomes to be unachievable, the final Regulations
require two or more: they thus raise the elegibility threshold
further, excluding more people from eligibility for lower level
services and leaving informal carers, where available, to fill in
the gaps. [104]
In practice, much will depend on interpretation of what
constitutes a 'significant impact' on a person's well-being.
However, the new criteria look set to be broadly equivalent to
the current 'substantial' band of eligibility.

Local authorities will be free to set their eligibility
threshold at a lower level, but not to raise it above the new
national level. If the new regulations are interpreted as broadly
equivalent to the 'substantial' band, they will reflect the
current status quo, and should prevent future restriction of
eligibility to 'critical' only. However, given the starting point
described above, it is difficult to see how the current pattern
of social care provision at or near crisis point only can be
turned around to support the government's agenda without a
substantial and sustained injection of funding. As the Joint
Committee on Human Rights pointed out, 'the new eligibility
criteria for adult social care… could represent a
potentially retrograde step in the promotion of the right to
independent living under Article 19 if the national eligibility
threshold is set so high as to exclude large numbers of adults
from access to care and support.' [105]

Prevention and early intervention, whilst highly desirable
from the perspectives of both the individual and the State,
require availability of low-level support from the onset of a
person's difficulty in order to avoid its escalation into crisis.
Moreover, it is often low and moderate level support services
that actually enable someone to go to work, to take part in
education, leisure or family activities, to participate in the
community and to make the choices to which they are entitled
under Article 19. As the Joint Committee on the Draft Care and
Support Bill concluded, "the overall level of funding available
for care and support will impact on how far the reforms…
can be realised, particularly the stated goal of shifting
emphasis from crisis intervention to prevention and early
intervention." [106]

4.3 To the maximum of available resources

For realisation of Article 19 to be genuinely progressive, in
line with international requirements, it must be achieved to the
maximum of available resources. As noted above, it has been
widely recognised that social care in England has suffered from
long-term systemic underfunding. Since 2010, in a period of
austerity and deep public funding cuts, the Coalition government
has provided some additional funding towards social care.
[107]
Nevertheless, in June 2012 the Association of Directors of Social
Services (ADASS) reported a £890 million shortfall in adult
social care funding, constituting a cumulative reduction in adult
social care budgets of £1.89 billion over two years, at a
time when pressure from the number of older and disabled adults
was growing at 3 per cent per year. [108] The majority of those reductions
were met from service re-design, efficiency or increased charges,
but front-line services have also been cut, and further direct
reductions in services have been predicted in the absence of a
new, sustainable funding system. [109] This situation also impacts more
widely. Funding shortfalls in local authority spending have
resulted in more delayed discharges from hospital; greater demand
for community and mental health services; more acute admissions
to hospital; more A&E attendances; and more emergency
readmissions, [110] with all the concomitant
negative impacts on those people's lives and their rights to
independent living.

The National Audit Office confirms that 'local authorities'
total spending on adult social care fell 8 per cent in real terms
between 2010-11 and 2012-13 and is projected to continue
falling.' [111]
Their analysis shows that around three-quarters of the fall in
spending has been achieved by reducing the amount of care
provided. As they point out, this may not be entirely negative:
it could reflect the effective prevention of need for care, as
well as tightening eligibility criteria or reductions in service.
Other savings may have been achieved through paying less for
care, again either reflecting more efficient commissioning, or a
risk of deterioration in standards in an already undervalued
profession. While central government's intention in the 2010
spending review may have been to protect spending on adult social
care, many agree that the additional funding provided is
insufficient. Moreover, that funding is not ring-fenced, and many
local authorities have had to take difficult decisions when
weighing up their overall priorities in a period of deep public
funding cuts. [112] The Department of Health estimates additional annual
costs to local authorities of between £17.9m and £23m
in moving to a national minimum eligibility threshold; and costs
to those authorities that have moved to "critical" only of
between £10m and £25m per annum to move back to a
'substantial'-equivalent level. [113] Further pressures will be imposed
from 2015 as local authorities take on responsibility for those
previously in receipt of support through the Independent Living
Fund. [114]

In 2012, whilst recognising the exceptional economic
circumstances facing the UK, the Joint Committee on Human Rights
reminded the Government that it must 'give due attention to [its]
obligations under international law'. [115] Those obligations include funding
the progressive realisation of Article 19 services to the maximum
of available resources. Felner [116] points out that monitoring this
requirement has its difficulties, but that it should not be
claimed that lack of progress is due to insufficient resources
when, in fact, the problem is not the availability but rather the
distribution of resources.

4.4 Monitoring progressive realisation

To meet international requirements, specific targets must be
met to satisfy a detailed substantive standard. International
human rights jurisprudence has developed methods of measuring
progress in the realisation of rights. One such framework is the
tri-partite duty to respect, protect and fulfil each right.
[117] The Maastricht Guidelines set
out obligations of conduct, and obligations of result. [118] Benchmarks or indicators have
been developed to help assess and monitor further
progress, [119] including in relation to CRPD
implementation; [120] and the Ruggie Principles, albeit not binding,
extend such obligations to the private sector. [121]
However it is done, it requires a structured system for
collection of relevant information and statistics to enable
measurement and monitoring. [122]

The CRPD requires that States designate one or more 'focal
points' within government to co-ordinate and monitor
implementation of the Convention. [123] The United Kingdom's 'focal
point' is the Office for Disability Issues (ODI), which is tasked
with co-ordinating the Coalition government's disability
strategy, "Fulfilling Potential". [124] This is an ongoing project, based
on three themes of realising aspirations, individual control and
changing attitudes and behaviour. These themes are broadly
compatible with the purpose and principles of the Convention, and
since 2012, strategy documents have specifically related their
content to implementation of the CRPD. Included in the strategy's
aspirations is reform of public services to support independence
and participation, [125] in line with Article 19.

The ODI is also responsible for collecting and publishing
disability statistics in accordance with CRPD Article 31, and it
does so in line with the three "Fulfilling Potential" themes.
However, the questions asked in the field of independent living
and, consequently, the data produced, are limited to broad
questions about 'life satisfaction' and whether disabled people
believe they 'frequently have choice and control' in their lives.
[126] Whilst
these questions are important for Article 19, they again reflect
the UK's strong focus on individual civil and political freedoms
as against the socio-economic rights essential for their
exercise. They fail to ask, for instance, about the 69,000
working age disabled adults estimated to have fallen out of the
care system due to tightening eligibility criteria; about the
experiences of the many self-funders who were unable to access
the system in the first place; about the many, particularly
older, people who have been placed against their wishes in
residential care for lack of resources in the community; or who
may face returning to residential care, in direct contravention
of Article 19, as a result of closure of the Independent Living
Fund. [127]

States must also maintain independent mechanisms for
monitoring implementation of the Convention. [128] The Equality and Human
Rights Commission (EHRC) fulfils this role in England. The EHRC
has published a Human Rights Measurement Framework based on
international models [129] which has been used to assess progress in
implementation of some key socio-economic as well as civil and
political rights. This framework is far more thorough and
stringent than that of the ODI, bringing together legal and
policy developments with concerns raised by a range of bodies,
from regulators and ombudsmen to non-governmental organisations
and media reports. However, work to assess progressive
realisation of the socio-economic aspects of CRPD Article 19
using this framework has not yet been undertaken, [130] with the result
that no independent assessment of progress or retrogression in
this field is currently available.

4.5 Effective remedies for breach

Full implementation of economic, social and cultural rights
requires that aggrieved individuals or groups have access to
appropriate means of redress or remedies, [131] a requirement echoed in Article
13 of the CRPD. Under the current welfare system in England, it
is normally necessary for social care disputes to exhaust
internal local authority complaints procedures [132] before proceeding to the
Ombudsman or to judicial review. However, none of these
administrative options address the merits of the substantive
decision being challenged, and all present difficulties for the
complainant.

The internal complaints procedure is designed to give 'voice'
to the service user as a means of improving service quality.
Research [133]
has consistently suggested that even this limited administrative
objective has not been effectively met. Key issues here are the
perceived lack of independence of internal complaints systems, in
an administrative setting where power relations between service
providers and users are highly unequal; and confused, sometimes
conflicting, expectations on the parts of both complainants and
service managers concerning the purpose and possible outcomes of
the procedure. [134] Judicial review currently provides the only 'legal'
recourse for dis-satisfied complainants. Following lively
Parliamentary debate, [135] section 73 of the Care Act ensures that all
registered care providers in England are covered by section 6 of
the Human Rights Act 1998 when providing domiciliary or
residential services, [136] so enabling claimants to assert their European
Convention rights in the courts. And, as we have seen above, the
Care Act principle of well-being is intended to carry indirect
legal weight in judicial review proceedings. [137] But here again, the
complainant faces many constraints and frustrations. The process
of judicial review, like internal complaints, concerns procedural
rather than substantive issues; [138] recent legal aid cuts have closed
the courtroom door to many applicants; [139] and case law has raised the
threshold for human rights claims in this field to all but the
most extreme cases. [140] The courts themselves have directed prospective
claimants to the Parliamentary or Local Government Ombudsmen, who
'are designed to deal economically… and effectively with
claims for compensation for maladministration.' [141] Here there are fewer
barriers for the complainant. The Ombudsmen's service is free and
accessible, their investigations inquisitorial and flexible,
their brief to counter public sector maladministration broad and
unfettered by precedent, and their remit inclusive of private
sector providers. [142] Moreover, the Ombudsmen recognise their role in
supporting international commitments to socio-economic
rights, [143]
and regularly deal with complaints that touch upon dignity and
rights in the context of disability. [144] However, here too, the focus
remains on 'maladministration' rather than substance, and those
complaints that reach the Ombudsman represent the tip of the
iceberg: the Ombudsmen's capacity to provide an effective channel
for redress is limited to a tiny minority of Article 19
cases. [145]

Section 72 of the Care Act allows for regulations to make
provision for appeals by individuals against decisions taken by a
local authority in exercising its functions under Part 1 of the
Act. At the time of writing, no draft regulations have yet been
issued for consultation. In the meantime, it is argued here that
the current 'monumentally opaque' [146] redress systems available are
inadequate to constitute the 'appropriate means of redress, or
remedies' required under international human rights law.

4.6 Central government accountability

Finally, international human rights law requires central
government accountability. It is States which are the
duty-holders under the CRPD and other international human rights
treaties; it is their national governments on which international
legal obligations rest. The Coalition government's 'localism'
agenda shifts many aspects of that responsibility to local
communities and to the individual. It is the local authority's
role to facilitate a 'thriving social market'. [147]
Through the system of 'personal budgets', [148] disabled people become
individual employers and consumers, stimulating market
competition and responsible for their own 'welfare' outcomes.

These localised, individualised and market-driven solutions
may constitute one effective method of facilitating enjoyment of
the right to live independently and be included in the
community. [149] However, they also present
significant risks. The UN Committee on Economic, Social and
Cultural Rights issued the following warning in 1994:

[g]iven the increasing commitment of Governments around the
world to market-based policies, it is appropriate in that context
to emphasize certain aspects of States parties' obligations. One
is the need to ensure that not only the public sphere, but also
the private sphere, are, within appropriate limits, subject to
regulation to ensure the equitable treatment of persons with
disabilities…. Where such protection does not extend
beyond the public domain, the ability of persons with
disabilities to participate in the mainstream of community
activities and to realize their full potential as active members
of society will be severely and often arbitrarily
constrained… in such circumstances it is incumbent on
Governments to step in and take appropriate measures to temper,
complement, compensate for, or override the results produced by
market forces. [150]

the focus on choice of service and resources is at best
insufficient and potentially counter to the overall goals of
independent living and increased autonomy and rights… This
can be seen as a problem, not with the abstract concept of
choice, but in the specific emphasis given in public policy to
the market model of individual agents making free purchasing
choices. [151]

They offer three critiques. Firstly, the question remains
whether individual purchasing choices will actually influence
market supply or service quality for the better. Secondly, the
exercise of choice in this way involves a challenge to existing
power relationships with professionals who have previously been
key players in decision-making. [152] And thirdly, even assuming
availability of accessible information, those with the insight,
energy and ability to identify better buys, or with access to
willing relatives or brokerage services, are likely to gain most
from the increased choice, while those without such advantages
risk poorer outcomes. As O'Cinneide points out, many disabled
people 'are not self-sufficient monist entities, but rather
depend upon collective social action to make provision for their
basic rights.' [153]

There therefore remains an important role for central
government - one which, in some respects, the present government
appears reluctant to shoulder. In development of the Care Act,
care and support was seen as 'a locally managed and delivered
service, for which local authorities are responsible.' [154] When the Joint Committee and
others [155] suggested that the Secretary
of State should also be subject to the general duty to have
regard to 'well-being', the government disagreed: '[l]ocal
authorities are responsible and accountable for social care. We
believe that creating new duties for the Secretary of State would
distort these clear lines of accountability.' [156] This
position was successfully overturned in debate. [157] Nevertheless, the
government's view remains that the additional resources it has
provided should be sufficient to enable local authorities to
protect access to care, and that 'ultimately, spending on social
care is a matter for local decision-making.' [158] As we
have seen, those local spending decisions impact directly on the
lives, choices and dignity of disabled people, for which national
government holds responsibility under the CRPD and Article 19.
There must therefore be a limit to how far central government can
distance itself from local decision-making and outcomes without
in effect resiling from its own overall accountability under
international human rights law.

5. Conclusion

This paper has examined the Care Act 2014 in relation to the
requirements of the UN Convention on the Rights of Persons with
Disabilities, in particular those of Article 19, the right to
live independently and be included in the community and the
socio-economic right to support services under Article 19(b). It
has found that the Act's over-arching principles are broadly
compatible with those of the Convention; and that its legislative
framework constitutes a significant improvement on previous
provisions. Nonetheless, it has argued that key elements are
missing from the Act which prevent it from fully meeting the
Convention's requirement for 'appropriate legislative,
administrative and other measures' for realisation of Article
19.

As an 'implementation' Convention, the CRPD demands 'paradigm
shift': a transformation in understanding of and approach to
disability from 'welfare' to 'rights'. To this purpose, Article
19 exemplifies the doctrine of indivisibility and interdependence
of rights: it blends together civil and political rights to
autonomy and participation with socio-economic rights to the
support services essential for their exercise. The 'wellbeing'
principle of the Care Act, by contrast, is not intended to create
any individual or directly enforceable rights. It has been argued
here that this outcome stems from successive United Kingdom
governments' reluctance to incorporate international economic,
social and cultural rights standards into domestic law, choosing
instead to view them as principles and objectives to be
implemented through the policies, laws and practices of the
British welfare state. In consequence, such rights are rendered
invisible in English independent living policy, law and
administration; and in the consciousness of individuals,
policy-makers and law-drafters. There is no recognition in the
Act of a right to live independently and be included in the
community; 'well-being' remains a 'principle', not a 'right'; the
socio-economic elements of Article 19 are not 'rights' but
'welfare'. The required 'paradigm shift' is not achieved, and
the opportunity to enact a new, CRPD-compliant right to live
independently and be included in the community is missed.

The invisibility of international standards in this context
has further consequences. Whilst international jurisprudence
requires progressive realisation to the maximum of available
resources, eligibility for social care in England has reduced
over a number of years due to systemic underfunding. Despite
international requirements for monitoring implementation, no
national targets for social care provision exist, and independent
monitoring of progress or retrogression is currently unavailable.
Where international law requires access to appropriate means of
redress, individuals aggrieved by a social care decision have
recourse only to 'monumentally opaque' [159] administrative procedures which
fail to address the substance of their claim. And where
international law requires central government accountability,
current policy devolves responsibility for social care funding
decisions to local level, and relies on market forces to deliver
outcomes. Provision of the support services essential for the
exercise of Article 19 remains vulnerable to retrogression,
unmonitored and unenforceable.

In England, the transition from a 'welfare' to a 'rights'
approach to disability which is the fundamental purpose of the
Convention is not yet fully accomplished. As a result, the
opportunity provided by development of the Care Act 2014 to enact
CRPD-compliant legislation to implement Article 19 has been
missed: the right to live independently and be included in the
community does not have full domestic legal effect. Partial
implementation of this key 'enabling' right in turn undermines
realisation of all Convention rights, and calls into question the
United Kingdom's Article 4(1) undertaking as a State Party to the
Convention to 'ensure and promote the full realisation of all
human rights and fundamental freedoms for all disabled people'
.

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[25] Such
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[27]
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[28] Law
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[29] Dept
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[31]
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[39]
Government argues that 'Although not mentioned specifically
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[40]
Department of Health (2012a) 'Reforming the law for adult
care and support: the Government's response to Law Commission
report 326 on adult social care', Cm 8379, July 2012,
paragraphs 3.9 & 3.13. The Care Act does include a duty
on local authorities to undertake assessment (s9) thereby
creating a 'right' to be assessed. Once 'eligible' needs have
been identified, there arises a duty to provide services to
meet those needs (s18). However, see below for discussion of
eligibility criteria and progressive realisation.

[41] Care
Act s2; prevention was one of two 'core' principles set out
in the government's 2012 White Paper on social care reform:
'Department of Health (2012) 'Caring for our future:
reforming care and support', Cm 8378, July 2012

[72] See
for instance United Kingdom of Great Britain and Northern
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[73] Quinn
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[75] Of
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[76] See
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[81] Under
UK devolution arrangements, responsibility for health and
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[82] See
also Collingbourne T (2012) 'Memorandum to the Joint
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[86]
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[87]
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[96]
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[101]
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[114]
The Independent Living Fund was originally set up in 1988 to
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The Fund was closed to new applicants in 2010, and will close
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[115]
Joint Committee on Human Rights (2012a) 'Implementation of
the Right of Disabled People to Independent Living', supra,
Recommendation 29

[117]
This gives rise to immediate obligations on the State not to
interfere with people's exercise of a right, and to ensure
that others do not violate it; and an immediate duty to
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[118]
Maastricht Guidelines on Violations of Economic, Social and
Cultural Rights, Maastricht, January 22-26, 1997

[119]
See for instance Hunt P (1996) 'The Right to Health: A Way
Forward at the International Level' in Hunt P, Reclaiming
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[120]
Office of the High Commissioner for Human Rights (2010)
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[135]
See section 4.8 of Long R, Powell T, Harker R (2013), Care
Bill [HL] Bill No 123 of 2013-14, Research Paper 13/71, House
of Commons Library, 11 December 2013; and section 2.6 of Long
R, Powell T (2014) Care Bill [HL] Committee Stage Report,
Bill No 168 of 2013-14, Research Paper 14/13, House of
Commons Library, 4 March 2014

[136]
Although purely private arrangements between care recipients
and providers would not be covered by this arrangement.
Social care funding reform: FAQs, House of Commons Library,
Standard Note SN/SP/6863, 15 May 2014

[137]
Secretary of State for Health (2012a), 'Reforming the law for
adult care and support: the Government's reponse to the Law
Commission report 326 on adult social care', Cm8379, July
2012, paras 3.9 and 3.13

[152]
See Collingbourne T, 'Administrative Justice? Implementing
Independent living in England: power, systems, identities'
(2013) 35/4 Journal of Social Welfare and Family
Law, 475-489 for further discussion

[153]
O'Cinneide C, (2009) 'Extracting protection for the rights of
persons with disabilities from human rights frameworks:
Established limits and new possibilities' in
Arnardóttir O M and Quinn G eds, (2009)
supra,163-198,164. Whilst the Care Act makes some provision
for independent advocacy support (s67, guidance chapter 7),
there remain many issues of contention regarding the exercise
of individual choice, including regarding English mental
capacity law and the requirements of CRPD Article 12 for
supported, as opposed to substitute, decision-making. For
further discussion of this topic, see House of Lords Select
Committee on the Mental Capacity Act, 'Mental Capacity Act
2005: post-legislative scrutiny', HL Paper 139, 13 March
2014; and the work of Lucy Series on https://thesmallplaces.wordpress.com

[154]
Secretary of State for Health (2013) 'The Care Act Explained,
including a response to consultation and pre-legislative
scrutiny on the Draft Care and Support Bill', Cm 8627, May
2013, para 25

[158]
Secretary of State for Health (2013) 'The Care Act
Explained', supra, Annex, Recommendation 2; see also Joint
Committee on Human Rights (2012a) 'Implementation of the
Right of Disabled People to Independent Living', supra,
p33-4